The day Veronika was born we were told 1 in 4 babies with Down syndrome have are born with a congenital heart defect….so later that day Veronika had a heart ultra sound and we were told ‘Veronika has a small hole in her heart and it was nothing to worry about’.

24 hours later Veronika had her 1st ECG and ‘the small hole’ was not so small. It was 8mm, which considering her heart was about the size of a walnut, we were then told ‘it was a significant hole and she would need open heart surgery at some point down the track to repair it’…

Veronika’s heart was closely monitored, and by the time she was 6 months old, Veronika was in the early stages of heart failure, her hole was getting bigger as her heart grew and one of her valves was ‘faulty’. Veronika continued to be closely monitored and around the time of Veronika’s 2nd birthday, her cardiologist sent to referral to the paediatric cardiac surgeon to see if he thought it was the right time to ‘fix Veronika’s heart’. Once we were in Melbourne and the surgeon did his investigations he agreed Veronika’s heart needed repairing, her hole was now 19mm, her liver was significantly enlarged(a sign of heart failure) and her chest was asymmetrical. At that appointment Veronika was moved from category 3 to category 1, and he said ‘go home, keep Veronika healthy and we will operate within a couple of months’.

It was only a couple of months before we went back to Melbourne for Veronika’s surgery. We spent a day doing the pre-op things, before going back to where we were staying the night before surgery.

The day had been full of investigations, tests and questions from the doctors and us. I remember when they were going through all the risks of surgery, they mentioned the risk of a stroke, to which my question was, ‘Veronika had already had a stroke, does that put her at an even higher risk of stroke?’ They weren’t sure as they hadn’t had that question from a parent before…..so all we could do was have faith and believe the following days surgery would be successful.

Only a couple of hours later I received a phone call to say the surgery was off, and the surgeon wanted to see Veronika and us in the morning. Veronika’s hole had reduced from 19mm to 10mm in a couple of months. The surgeon had never seen such a big hole reduce by such a significant amount in such a short amount of time, he was most impressed but couldn’t explain how as this was medically impossible. He said he wanted to wait 6 months and see what was going on then.

So we went home and returned 6 months later, for a follow up and the hole was even smaller. The surgeon sent us off home again for monitoring.

Veronika has been seeing the visiting cardiologist since, and she saw him at the end of November, just over a week ago. At this appointment Veronika again had an ECG, and I was then told by a rather excited cardiologist that Veronika has a ‘normal structured and functioning heart’. The hole is GONE, HEALED, and he wouldn’t need to see Veronika again. He was excited as it’s very reassuring to know her heart is functioning normally before her upcoming hip reconstruction surgery(which we are still waiting for a date, but fingers crossed it’s not much longer).

Veronika continues to write her own book rather than go by the book!

#congenitalheartdefect
#havefaithandbelieve
#noheartsurgeryneeded
#mymiracle
#veronikawillwalk